How persons with systemic mastocytosis describe the time between symptom onset and receiving diagnosis.

AIM: The aim of the study was to explore how persons with systemic mastocytosis (SM) described the time between the onset of symptoms and signs and getting the diagnosis. BACKGROUND: SM is a rare disease caused by the accumulation of clonal mast cells with abnormal function. The symptoms and signs of the disease are varied, often diffuse and affect individuals differently. Due to this complexity, a multi-disciplinary diagnostic approach is required, in which general practitioners play an important part in identifying and referring patients relevant for such investigations. METHODS: Sixteen persons with SM were interviewed about their experiences of the time before the diagnosis was received. Systematic text condensation was used in the analysis process. FINDINGS: The time between symptom and signs onset and diagnosis was perceived as difficult. SM often had a complex and unpredictable effect on a person's daily life, long before diagnosis. In the analysis, three themes were found. Having symptoms and signs with an unknown cause included the participants' descriptions of numerous symptoms and signs, often years before diagnosis. These could be severe and result in worries for both participants and their next-of-kin. Dealing with the symptoms and signs encompassed the different ways in which the participants coped with the symptoms and signs, and sought relief. Being a patient without a diagnosis underlined the lack of information and knowledge within healthcare, often resulting in a delayed or incorrect diagnosis. The study highlighted the importance of a person-centred approach and the need to increase knowledge of the disease within primary care, to shorten this stressful and vulnerable time.

Living with systemic mastocytosis: Balancing between vulnerability and resilience: A qualitative study.

PURPOSE: Systemic mastocytosis is a rare group of haematological malignancies with heterogeneous symptoms from various organs, and an overall survival that ranges from normal for indolent SM (ISM) to 2-4 years for advanced SM subtypes (Adv SM). The purpose of this study was to describe the experiences of everyday life among persons diagnosed with ISM or Adv SM. METHODS: In this qualitative study, data were collected through purposive sampling and semi-structured interviews with 16 participants diagnosed with ISM (n = 9) or Adv SM (n = 7). Data were subsequently analysed with content analysis. RESULTS: Three main categories were identified. The persistent presence of the disease includes findings of how the symptoms affected the participants and how they handled its limitations and the adaptions and medication management required. Struggling against ignorance illustrates contacts with both healthcare professionals and strangers. The participants described being forced to be experts on SM due to a general lack of knowledge. An illness or wellness perspective encompasses the participants' feelings of vulnerability and alienation, but also how various strategies were used to gain emotional control. CONCLUSIONS: The disease has considerable impact on everyday life, with constant efforts required to manage symptoms and medication side effects. The complexity and rarity of the disease complicated relationships with healthcare professionals and contributed to feelings of marginalisation and alienation. The participants described feeling vulnerable, but used a multitude of strategies in their striving for resilience. Trusting relationships with healthcare professionals, family members and friends promoted a wellness perspective.

The ethics of DNR-decisions in oncology and hematology care: a qualitative study.

BACKGROUND: In cancer care, do not resuscitate (DNR) orders are common in the terminal phase of the illness, which implies that the responsible physician in advance decides that in case of a cardiac arrest neither basic nor advanced Coronary Pulmonary Rescue should be performed. Swedish regulations prescribe that DNR decisions should be made by the responsible physician, preferably in co-operation with members of the team. If possible, the patient should consent, and significant others should be informed of the decision. Previous studies have shown that physicians and nurses can experience ethical dilemmas in relation to DNR decisions, but knowledge about what ethical reasoning they perform is lacking. Therefore, the aim was to describe and explore what ethical reasoning physicians and nurses apply in relation to DNR-decisions in oncology and hematology care. METHODS: A qualitative, descriptive and explorative design was used, based on 287 free-text comments in a study-specific questionnaire, answered by 216 physicians and nurses working in 16 oncology and hematology wards in Sweden. Comments were given by 89 participants. RESULTS: The participants applied a situation-based ethical reasoning in relation to DNR-decisions. The reasons given for this were both deontological and utilitarian in kind. Also, expressions of care ethics were found in the material. Universal rules or guidelines were seen as problematic. Concerning the importance of the subject, nurses to a higher extent underlined the importance of discussing DNR-situations, while physicians described DNR-decisions as over-investigated and not such a big issue in their daily work. CONCLUSION: The study revealed that DNR-decisions in oncology and hematology care gave rise to ethical considerations. Important ethical values described by the participants were to avoid doing harm and to secure a peaceful and "natural" death with dignity for their dying patients. A preference for the expression "allow for natural death" instead of the traditional term "do not resuscitate" was found in the material.

Perspectives on the DNR decision process: A survey of nurses and physicians in hematology and oncology.

INTRODUCTION: In cancer care, do-not-resuscitate (DNR) decisions are made frequently; i.e., decisions not to start the heart in the event of a cardiac arrest. A DNR decision can be a complex process involving nurses and physicians with a wide variety of experiences and perspectives. Previous studies have shown different perceptions of the DNR decision process among nurses and physicians, e.g. concerning patient involvement and information. DNR decisions have also been reported to be unclear and documentation inconsistent. OBJECTIVE: The aim was to investigate how important and how likely to happen nurses and physicians considered various aspects of the DNR decision process, regarding participation, information and documentation, as well as which attributes they found most important in relation to DNR decisions. METHODS: A descriptive correlational study using a web survey was conducted, including 132 nurses and 84 physicians working in hematology and oncology. RESULTS: Almost half of the respondents reported it not likely that the patient would be involved in the decision on DNR, and 21% found it unimportant to inform patients of the DNR decision. Further, 57% reported that providing information to the patient was important, but only 21% stated that this was likely to happen. There were differences between nurses and physicians, especially regarding participation by and information to patients and relatives. The attributes deemed most important for both nurses and physicians pertained more to medical viewpoints than to ethical values, but a difference was found, as nurses chose patient autonomy as the most important value, while physicians rated non-maleficence as the most important value in relation to DNR decisions. CONCLUSION: Nurses and physicians need to be able to talk openly about their different perspectives on DNR decisions, so that they can develop a deeper understanding of the decisions, especially in cases where they disagree. They should also be aware that what they think is important is not always likely to happen. The organization needs to support such discussions through providing an environment that allows ethical discussions on regular basis. Patients and relatives will also benefit from receiving the same information from all caregivers.

Ethical competence in DNR decisions -a qualitative study of Swedish physicians and nurses working in hematology and oncology care.

BACKGROUND: DNR decisions are frequently made in oncology and hematology care and physicians and nurses may face related ethical dilemmas. Ethics is considered a basic competence in health care and can be understood as a capacity to handle a task that involves an ethical dilemma in an adequate, ethically responsible manner. One model of ethical competence for healthcare staff includes three main aspects: being, doing and knowing, suggesting that ethical competence requires abilities of character, action and knowledge. Ethical competence can be developed through experience, communication and education, and a supportive environment is necessary for maintaining a high ethical competence. The aim of the present study was to investigate how nurses and physicians in oncology and hematology care understand the concept of ethical competence in order to make, or be involved in, DNR decisions and how such skills can be learned and developed. A further aim was to investigate the role of guidelines in relation to the development of ethical competence in DNR decisions. METHODS: Individual interviews were conducted with fifteen nurses and sixteen physicians. The interviews were analyzed using thematic content analysis. RESULTS: Physicians and nurses in the study reflected on their ethical competence in relation to DNR decisions, on what it should comprise and how it could be developed. The ethical competence described by the respondents related to the concepts being, doing and knowing. CONCLUSIONS: In order to make ethically sound DNR decisions in oncology and hematology care, physicians and nurses need to develop appropriate virtues, improve their knowledge of ethical theories and relevant clinical guidelines. Ethical competence also includes the ability to act upon ethical judgements. Continued ethical education and discussions for further development of a common ethical language and a good ethical working climate can improve ethical competence and help nurses and physicians cooperate better with regard to patients in relation to DNR decisions, in their efforts to act in the best interest of the patient.

Development of health-related quality of life and symptoms of anxiety and depression among persons diagnosed with cancer during adolescence: a 10-year follow-up study.

OBJECTIVE: The main aim was to investigate the development of health-related quality of life (HRQOL) and symptoms of anxiety and depression in a cohort diagnosed with cancer during adolescence from shortly after up to 10 years after diagnosis. METHODS: Participants (n = 61) completed the SF-36 and the HADS shortly; six, 12, and 18 months; and two, three, four, and 10 years (n = 28) after diagnosis. Polynomial change trajectories were used to model development. RESULTS: Polynomial change trajectories showed an initial increase which abated over time into a decrease which abated over time for the SF-36 subscales Mental Health and Vitality; an initial decline which abated over time into an increase for HADS anxiety; and an initial decline which abated over time into an increase which abated over time for HADS depression. The SF-36 mental component summary showed no change from two to 10 years after diagnosis whereas the SF-36 physical component summary showed an increase from two years after diagnosis which declined over time. Ten years after diagnosis 29% reported possible anxiety. CONCLUSIONS: Development of HRQOL and symptoms of anxiety and depression appears to be non-linear among persons diagnosed with cancer during adolescence. Well into permanent survivorship an increase in symptoms of anxiety is shown and approximately a third of the participants report possible anxiety. The findings indicate the need for: studies designed to pinpoint the times of highest psychological risk, clinical follow-up focusing on psychological problems, and development of effective psychological interventions for survivors of adolescent cancer. © 2015 The Authors. Psycho-Oncology published by John Wiley & Sons Ltd.

Striving for good nursing care: nurses' experiences of do not resuscitate orders within oncology and hematology care.

BACKGROUND: Within oncology and hematology care, patients are sometimes considered to have such a poor prognosis that they can receive a do not resuscitate order from the physician responsible, stipulating that neither basic nor advanced coronary pulmonary rescue be performed in the event of a cardiac arrest. Studies on do not resuscitate decisions within oncology and hematology units, focusing on the specific role of the nurse in relation to these decisions, are scarce. OBJECTIVE: The aim of this study was to investigate hematology and oncology nurses' experiences and perceptions of do not resuscitate orders, in order to achieve a deeper understanding of the nurses' specific role in these decisions. RESEARCH DESIGN: A qualitative, descriptive methodology with individual semi-structured interviews was used. PARTICIPANTS AND RESEARCH CONTEXT: A total of 15 nurses from eight hematology/oncology wards in four hospitals in Sweden were interviewed individually. ETHICAL CONSIDERATIONS: In accordance with national regulations, an ethical review was not required for this study. The research followed international guidelines for empirical research, as outlined in the Helsinki Declaration. FINDINGS: The nurses strived for good nursing care through balancing harms and goods and observing integrity and quality of life as important values. Experienced hindrances for good care were unclear and poorly documented decisions, uninformed patients and relatives, and disagreements among the caregivers and family. The nurses expressed a need for an ongoing discussion on do not resuscitate decisions, including all concerned parties. CONCLUSION: In order to provide good nursing care, nurses need clear and well-documented do not resuscitate orders, and patients and relatives need to be well informed and included in the decisions. To increase the understanding for each other's opinions within the medical team, regular ethical discussions are required.

Are nurses and physicians able to assess which strategies adolescents recently diagnosed with cancer use to cope with disease- and treatment-related distress?

PURPOSE: It was examined whether nurses and physicians are able to identify whether adolescents with cancer have used certain strategies to cope with disease- and treatment-related distress. METHOD: Adolescents (N = 48) were asked whether they had used a number of strategies to cope with disease- and treatment-related distress and, if so, the extent to which they had used these. Nurses and physicians were asked to answer the same questions on behalf of a certain adolescent. RESULTS: Nurses overestimate the extent to which adolescents use strategies to cope with distress, and neither nurses nor physicians, physicians somewhat more, are successful in identifying the extent to which certain adolescents use strategies. CONCLUSION: Health-care staff's possibilities to assess how patients cope with disease- and treatment-related distress should be increased. A number of changes in education and the organization of clinical care, especially with regard to assessing patients' needs, are suggested.

Accuracy of assessment of distress, anxiety, and depression by physicians and nurses in adolescents recently diagnosed with cancer.

BACKGROUND: As staff members prioritize medical resources for patients, it is imperative to find out whether their assessments of patients' health status agree with patients' assessments. The degree to which physicians and nurses can identify the distress, anxiety, and depression experienced by adolescents recently diagnosed with cancer was examined here. PROCEDURE: Adolescents undergoing chemotherapy (13-19 years, n = 53), physicians (n = 48), and nurses (n = 53) completed a structured telephone interview, 4-8 weeks after diagnosis or relapse, investigating disease and treatment-related distress, anxiety, and depression. RESULTS: The accuracy of staff ratings of physical distress could be considered acceptable. However, problems of a psychosocial nature, which were frequently overestimated, were difficult for staff to identify. Staff underestimated the distress caused by mucositis and worry about missing school more than they overestimated distress. These aspects were some of the most prevalent and overall worst according to the adolescents. Both physicians and nurses overestimated levels of anxiety and depression. Nurses tended to show higher sensitivity than physicians for distress related to psychosocial aspects of distress, while physicians tended to show higher accuracy than nurses for physical distress. CONCLUSIONS: Staff was reasonably accurate at identifying physical distress in adolescents recently diagnosed with cancer whereas psychosocial problems were generally poorly identified. Thus, the use of staff ratings as a "test" to guide specific support seems problematic. Considering that the accuracy of staff ratings outside a research study is probably lower, identification of and action taken on adolescent problems in relation to cancer diagnosis and treatment need to rely on direct communication.

Perceptions of distress among adolescents recently diagnosed with cancer.

With the goal of studying perceived distress among adolescents recently diagnosed with cancer, 56 adolescents were interviewed by telephone 4 to 8 weeks after diagnosis. The interviews included a structured interview guide, the Hospital Anxiety and Depression Scale, and the subscales Mental Health and Vitality from SF-36. "Losing hair" and "missing leisure activities" were identified as the most prevalent aspects of distress, whereas "missing leisure activities" and "fatigue" were rated with the highest levels of distress. "Worry about not getting well," "mucositis," "nausea," "pain from procedures and treatments," and "worry about missing school" were rated as the overall worst aspects by most adolescents. Twelve percent reached the cutoff score for potential clinical anxiety and 21% for potential clinical depression. Ratings of Mental Health and Vitality were lower than norm values. Prevalence of pain from procedures/treatments was higher among those who scored in the clinical range of depression, and more adolescents who were treated at a local hospital scored in the clinical range of anxiety. The findings show that ratings of prevalence, levels, and aspects perceived as the worst are not necessarily in accordance, that adolescents scoring in the clinical range of psychological distress are in the minority, and that the adolescents experience reduced physical and mental well-being.

Distressing and positive experiences and important aspects of care for adolescents treated for cancer. Adolescent and nurse perceptions.

Distressing and positive experiences for adolescents with cancer with regard to being told the diagnosis, receiving chemotherapy and being admitted to the ward, and important aspects of care for adolescents with cancer was investigated. Data were gathered through semi-structured interviews with 23 adolescents and 21 nurses, and analysed by content analysis. The findings indicate that cancer during adolescence is connected with a range of negative experiences such as fears of alienation, fears of altered appearance, fears of dying, and various physical concerns. Positive experiences include positive relations to staff and being well cared for. Important care for adolescents treated for cancer consists mainly of meeting nice, friendly, supportive, and competent staff, who provide them with age-appropriate information. The findings indicate that adolescents with cancer experience a range of negative and positive experiences related to disease and treatment and that good care for adolescents with cancer is a broad, complex, and multidimensional phenomenon.

Distressing events for children and adolescents with cancer: child, parent, and nurse perceptions.

Distressing events for children with cancer (N = 121), 0 to 19 years of age, were investigated. Data were gathered through interviews with 50 children, 65 parents, and 118 nurses. Each participant was asked: "Has there been any especially distressing event for you/your child/the child with regard to disease and treatment?" Data were analyzed by content analysis. The categories that emerged from the analysis were grouped into a physical and an emotional dimension. The most frequently mentioned aspects of distress referred to the physical dimension: pain resulting from diagnostic procedures and treatments, nausea, and fatigue. The most frequently mentioned physical aspect of distress was, for children 0 to 3, 4 to 7, and 8 to 12 years of age, pain resulting from diagnostic procedures and treatments, and for children > or =13 years of age, nausea. The most frequently mentioned aspects of distress referred to the emotional dimension were categorized as confinement, feeling of alienation, and worry before medical procedures. The most frequently mentioned emotional aspect of distress was, for children 0 to 3 years of age, confinement; 4 to 7 years of age, feeling of alienation; 8 to 12 years of age, worry about death; and > or =13 years of age, changed appearance. For children 0 to 3, 4 to 7, and > or =13 years of age, aspects of distress of a physical character were mentioned most frequently. For children 8 to 12 years of age, aspects of distress of an emotional character were mentioned most frequently.

Important aspects of care and assistance for children 0-7 years of age being treated for cancer. Parent and nurse perceptions.

Aspects of care and assistance that are important for children aged 0-7 years who are being treated for cancer were examined. Parents ( N=57) and nurses ( N=59) were asked: "What caring aspects are important in ensuring that your child/the child feels cared for?" and "What help, if any, does your child/the child need outside the hospital?". Data were analysed by content analysis. The following aspects of care were identified: amusement, clinical competence, continuity, emotional support, family participation, honest communication, information, participation in decision making, satisfaction of basic needs, social competence, the parents are well cared for, and time. Parents most frequently mentioned social competence and amusement, while nurses most frequently mentioned continuity and information. The following aspects of assistance were identified: accessible care, amusement, emotional support, family life, meeting friends, normal life, practical support, rehabilitation and school support. At least a third of the children did not need any assistance, according to parents and nurses. Parents most frequently mentioned family life, meeting friends and practical support. Nurses most frequently mentioned normal life and family life. Taken together, the results indicate that not only a family but many more people need to be involved to help children with cancer to be cured not only in a biological but also a psychosocial sense.